Public Comments July 21-22, 2021 - Interagency Autism Coordinating Committee
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Public Comments
July 21-22, 2021
1
Table of Contents
Oral Comments ............................................................................................................................................. 4
Christopher Banks on behalf of The Autism Society of America .................................................................. 5
Jill Escher, J.D., M.A. on behalf of National Council on Severe Autism ........................................................ 7
Bin Feng....................................................................................................................................................... 10
Kelly Israel on behalf of Autistic Self Advocacy Network............................................................................ 11
Noemi Spinazzi on behalf of M.D., Down syndrome-Autism workgroup of the Down Syndrome Medical
Interest Group ............................................................................................................................................. 15
Written Comments ..................................................................................................................................... 16
Oren Evans .................................................................................................................................................. 17
Ramey Chisum............................................................................................................................................. 18
Resa Warner ................................................................................................................................................ 19
Kevin Tallman .............................................................................................................................................. 20
Blesse Fields ................................................................................................................................................ 21
Marc Lefebvre ............................................................................................................................................. 22
Jobie Steppe ................................................................................................................................................ 23
Rob Avina .................................................................................................................................................... 24
Elissa Leonard ............................................................................................................................................. 25
Elissa Leonard ............................................................................................................................................. 26
Elissa Leonard ............................................................................................................................................. 27
Trenton Ashizawa ....................................................................................................................................... 29
Harold Frost III, Ph.D. .................................................................................................................................. 30
Harold Frost III, Ph.D. .................................................................................................................................. 32
Harold Frost III, Ph.D. .................................................................................................................................. 33
Harold Frost III, Ph.D. .................................................................................................................................. 35
Harold Frost III, Ph.D. .................................................................................................................................. 36
Nayeema Bashar ......................................................................................................................................... 37
TD Wallin ..................................................................................................................................................... 38
Paula Notarino ............................................................................................................................................ 41
Ann Lindsey-Frost ....................................................................................................................................... 42
Happy Bird................................................................................................................................................... 43
Jean Public................................................................................................................................................... 44
Martha Gabler ............................................................................................................................................. 45
2Connie Louderback ..................................................................................................................................... 46
Francine Hogan ........................................................................................................................................... 47
Lisa Elliott .................................................................................................................................................... 48
Jane Kleiman ............................................................................................................................................... 49
Karin Lunsford ............................................................................................................................................. 50
David Kassel on behalf of Massachusetts Coalition of Families and Advocates, Inc (COFAR, Inc) ............. 51
Lin Zhang ..................................................................................................................................................... 52
Rita Whitney ............................................................................................................................................... 53
Dawn Sikora ................................................................................................................................................ 54
La Donna Ford, M.D. ................................................................................................................................... 55
Alexander MacInnis, M.S., M.S. .................................................................................................................. 57
Mary Barbera, Ph.D. .................................................................................................................................... 59
Alicia Mesa .................................................................................................................................................. 60
Deborah Blair Porter ................................................................................................................................... 61
Stephen Wallace, J.D. and Debra Wallace .................................................................................................. 64
Adrienne Benjamin ..................................................................................................................................... 66
Rachel Johnson ........................................................................................................................................... 67
Brita Darany von Regensburg ..................................................................................................................... 69
Joy McDaniel ............................................................................................................................................... 70
Jennifer Degner ........................................................................................................................................... 72
Arzu Forough on behalf of Washington Autism Alliance ............................................................................ 73
Eileen Nicole Simon, Ph.D., R.N. ................................................................................................................. 75
Heather Gordon .......................................................................................................................................... 75
Kim Oakley .................................................................................................................................................. 77
Email Campaign Form Letter 1 .................................................................................................................... 79
Email Campaign Form Letter 2 .................................................................................................................... 81
Email Campaign Form Letter 3 .................................................................................................................... 82
3Oral Comments
4Christopher Banks on behalf of The Autism Society of America
The Autism Society of America appreciates the efforts of IACC and its committee. Our organization, with
its 74 affiliates throughout 33 states, has traditionally had representation on IACC. Since 1965, the
Autism Society of America has worked tirelessly to support the autism community through advocacy,
education, information and referrals, support and community building. We have made it our mission to
improve the lives of all affected by autism, alongside our affiliates nationwide.
Through the decades, the Autism Society has proudly served the autism community and established
itself as the nation’s oldest and leading grassroots autism organization. Together, we are creating a
more inclusive and accepting society full of opportunities for autistic individuals to maximize their
potential.
The COVID-19 pandemic brought unparalleled challenges and grief to the global community, and our
autism families were disproportionately affected. Through service interruptions, school closures, job
loss, isolation, lack of respite care, and regression, many autistic individuals and families were left with
few support options and increased worries.
The Autism Society and its network of affiliates served over 668,000 individuals and families affected by
autism in 2020. 154,000 people called or emailed Autism Society helplines across the country; 124,000
people attended events, mostly virtual, to gain connection and community; 26,000 people attended
online and live support groups to battle isolation, stress, and grief.
While we do not have a representative voice on the committee, we appreciate the opportunity to offer
our concerns and ideas for which we would like IACC to focus some of its efforts.
In addition to the legislative agenda of the Consortium for Citizens Disabilities which the Autism Society
supports and is working diligently to see achieved, the Autism Society would like IACC to encourage
other federal agencies to work with us in the following three areas which are strategic priorities for the
Society:
1. First Responder Training (Law Enforcement, Fire, EMT)
The Society will develop a process for creating teams to provide training locally through our affiliate
network. The teams will include representatives from law enforcement, clinicians (i.e. Social Worker),
Self-Advocates, parents, and researchers.
In addition, there will be subject matter experts included in the training and certification process for
police departments, first responders, criminal justice professionals, district attorneys, and other law
enforcement entities. The certification program will provide an Autism Society stamped certificate
and will require a renewal.
Efforts in this area will result in a reduction of injuries, a reduction of fatalities, and a reduction of
arrests within the autism community.
2. Water and Wandering Safety Programs
The Society recognizes that drowning is among the leading causes of death in the autism community. A
study from the Centers for Disease Control and Prevention (CDC) found that children with autism
5spectrum disorder (ASD) were significantly (60%) more likely to wander than children in other study
groups. Furthermore, children with ASD are at a substantially increased risk of injury and mortality from
drowning.
This, coupled with the perils of wandering for the more vulnerable members of the community,
necessitates the establishment of a Water and Wandering Safety program.
The Society will build a curriculum for water and wandering safety based on research and best practices.
The Society will use a “train the trainer” model where we will arrange for Affiliate training. Ideally,
Affiliates will complete a comprehensive training on water and wandering safety.
3. Employment
Recent data indicated that unemployment and underemployment in the autism community is as high as
90%. The Society recognizes the need for a systemic change that provides opportunities for
professional and non-professional employment, as well as the need to increase opportunities for
competitive integrated employment and other services and supports in the community.
Working with collaborators nationwide and members of the autism community, the Society will
gather government officials, organized labor, educational institutions, employers, and
individuals from the autism community to address this issue in a comprehensive approach.
The Society will provide the venue for conversation that leads to more autistic individuals being
gainfully employed; this effort will look to increase opportunities, encourage job development, train
companies, managers and coworkers, prepare qualified candidates and support individuals in their
personal pursuit of success.
The Society will devise an approach to explore the issue of unemployment and underemployment
in the ASD community. The outcome will be an executable plan that can be implemented to
reduce unemployment and underemployment. The Society will develop ideas for national programs that
significantly improve services to help people with autism find and retain work in their
community.
These are not the only concerns for the autism community. We are also concerned with other issues
including vaccine hesitancy, housing, transitional services, diversity and inclusion.
6Jill Escher, J.D., M.A. on behalf of National Council on Severe Autism
Re: Priorities for the federal response to autism
The National Council on Severe Autism, an advocacy organization representing the interests of
individuals and families affected by severe forms of autism and related disorders, thanks you for your
service to the IACC in effectuating the congressional mandate to further federally funded autism-related
research and programs, and ultimately improve prospects for prevention, treatment and services.
Dramatically increasing numbers of U.S. children are diagnosed with — and disabled by — autism
spectrum disorders. In the segment we represent, those children grow into adults incapable of caring for
themselves and require continuous or near-continuous, lifelong services, supports, and supervision.
Individuals in this category exhibit some or all of these features:
• Nonverbal or have limited use of language
• Intellectual impairment
• Lack of abstract thought
• Strikingly impaired adaptive skills
• Aggression
• Self-injury
• Disruptive vocalizations
• Property destruction
• Elopement
• Anxiety
• Sensory processing dysfunction
• Sleeplessness
• Pica
• Co-morbidities such as seizures, mental illness, and gastrointestinal distress
Given the immense and growing burden on individuals, families, schools, social services and medical
care, the autism crisis warrants the strongest possible federal response.
Parents are panicked about the future. Siblings are often terrified about having children of their own,
and/or the burden of providing lifelong care for their very much loved but highly challenging brothers
and sisters. Schools cannot recruit enough teachers and staff to keep up with growing demand. Adult
programs and group homes refuse to take severe cases. Vastly more must be done to both understand
the roots of this still-mysterious neurodevelopmental disorder and to prepare our country for the
tsunami of young adults who will need care throughout their lifetimes, particularly as their caring and
devoted parents age and pass away.
7With that in mind, we ask the members of the IACC to understand the priorities of our community.
While this list is not exhaustive it represents many of the issues our families consider most urgent.
In the course of committee deliberations:
The amorphous word “autism” should never obscure the galactic differences among people given this
diagnosis. The construct of “autism” — and it is just that, an artificial human invention contorted by
political and historical forces — has thrown together into one bucket abnormal clinical presentations
that often have nothing in common. A person in possession of intact cognitive abilities and/or adaptive
functioning who suffers from social anxiety and sensory processing differences has no meaningful
overlap with a person with severe intellectual impairment, little to no adaptive skills, and aggressive
behaviors. The IACC should take care to make distinctions at every juncture where “autism” is invoked in
a general way.
Zero tolerance for anti-parent prejudice. It has been alarming to witness the re- emergence of parent-
blaming in some sectors of the autism community. Parents provide the lion’s share of support for both
children and adults with autism and have been at the forefront of reforms aimed at improving the lives
of those disabled by autism. Parents also most reliably speak out on behalf of the best interests of their
non- or minimally verbal children. We ask that the attitude of the IACC be one of zero tolerance for the
disturbing trend of anti-parent prejudice.
Honest language to communicate realities. It is crucial that discussions at the federal level retain the
language the reflects our clinical and daily realities, such as the following examples we commonly hear
from our families and practitioners: abnormal, maladaptive, catastrophic, chaos, low-functioning,
suffering, devastating, panicked, hopeless, desperate, exhaustion, overwhelming, anguish, traumatic,
bankrupting, financially crushing, suicidal, epidemic, tsunami. We stress this not to detract from the
many positives found in every person disabled by autism, of course those also exist, but to ensure that
the challenges of autism are never semantically erased.
As federal priorities are developed:
The ever-increasing prevalence of autism must be treated with the utmost gravity.
Rates of autism that meet a strict definition of developmental disability have soared 40-fold
in California over the past three decades. Rates of autism now exceed 7% in some school districts in New
Jersey. There is overwhelming evidence for growing rates of disabling autism, and little evidence this has
been caused by non-etiologic factors such as diagnostic shifts. We have both a pragmatic and moral duty
to discover the factors driving this alarming, unprecedented surge in neurodevelopmental disorders
among our youth and young adults. Clearly, vaccines and postnatal events are not responsible for the
surge in autism, but many other factors warrant urgent attention so we can finally “bend the curve” of
autism.
8Maximizing the range of options available to our disabled children and adults. We need a broad range
of educational, vocational and residential services to meet the very diverse needs and preferences of
the autism population — and this includes specialized and disability-specific settings that are are
equipped to handle the intensive needs posed by severe autism. The post-21services “cliff” is a gut-
punching reality across our country. Lack of non-competitive employment options. Lack of day
programs. Few or no housing options. No HUD vouchers. Little to no crisis care. A healthcare system and
ERs utterly unprepared for this challenging population. Aging parents. Lack of direct support providers.
Lack of agencies willing to take hard cases. All of this amounts to a nightmare for our individuals and
families. Clearly, massive policy changes are needed across multiple domains to maximize options for
this growing population.
A desperate need for treatments. Regrettably, the therapeutic toolbox we have today is largely the
same as two decades ago. While a cure for autism is unlikely to ever arise owing to the early
developmental nature of the disorder, the IACC should push for research on potential therapeutics that
can mitigate distressing symptoms such as aggression, self- injury, anxiety, insomnia, and therefore
improve quality of life while decreasing the costs and intensities of supports. The research may include
medical treatments such as psychopharmaceuticals, cannabis products, TMS, and others, as well as non-
medical approaches.
We appreciate this committee’s commitment to autism prevention, treatment and services, and for
your consideration of our community’s priorities.
9Note: Personally Identifiable Information (PII) has been redacted in this document.
Bin Feng
I would like to make some comments on the employment for Autistic adults. I am a parent of 21vyears
old Autistic young [name redacted]. I have been helping him to keep his job as a janitor. Even during the
pandemic he still keeps working.we are very proud of him. We now truly believe many of the toung
adults on the spectrum could become a valuable and capable workers as long as we give them the right
training,give them the right job and help them with the right people. To have a job not only just get a
paycheck, [name redacted] also learned how to manage his time and routines around his working
schedules, learned how to travel independently, how to follow instructions and how to learn from his
mistakes and bounce back. The confidence he gets from his working experience is the greatest reward
we could image. From now he is willing to cast his votes,he is willing to join the advocacy group,he is
thinking one day he can live by himself.
But the journey to employment for Autistic adults are far frommeasy. We know about 80% are
unemployed, the highest among all the other disabilities. We need investment more on their pathway to
employment. The Federal government should be the leading force to collaborate with all aspects. The
Medicaid services should have started as early as 14 years old for them to start career exploration and
pre-vovational trainig. There are many jobs in the community woukd be a perfect match for Autistic
young. The employers could get incentives to open and keep employees on the spectrum. Those
investments are very crucial to the Autistic adults since they can have a pathway to gain independence
and self-esteem. We have done so little on this in the past, it is our time to do now.
10Kelly Israel on behalf of Autistic Self Advocacy Network
Thank you for the opportunity to submit written comments. The Autistic Self Advocacy Network (ASAN)
is pleased that, after an absence of 2020 meetings due to the coronavirus pandemic, the Interagency
Autism Coordinating Committee (IACC) will resume its efforts to ensure that funding for autism research
is properly allocated. New meetings for the IACC represent an opportunity for the committee to further
commit to the values articulated in its 2018-2019 Strategic Plan, namely to “accelerate and inspire
research, and enhance service provision and access, that will profoundly improve the health and quality
of life of every person on the autism spectrum across the lifespan.”1
In particular, the reconvening of the IACC represents an important opportunity to reform the federal
government’s autism research priorities. The priorities of the federal government set a standard for the
direction that privately funded research should take. Research into intellectual and developmental
disabilities (IDD) - particularly research on the supports and services that best enhance living, learning
and working in our communities - has the potential to improve the lives of millions. Nonetheless, autism
research in the past has been excessively focused on the cause and prevention of autism, as well as
medications and coercive therapies designed to make the autistic person appear less autistic. The IACC’s
2021 meetings could, instead, pave the way to a better future for all autistic people.
The Autistic Self Advocacy Network (ASAN), a 501(c)(3) nonprofit advocacy organization created by and
for autistic people ourselves, shares the IACC’s commitment to better autism research. ASAN’s primary
goal is and has always been to ensure that research funding is directed towards high-quality research
with the highest potential to directly benefit autistic people. ASAN has commented on many of the
IACC’s full committee meetings in the past in order to provide the committee with input on the values
and interests of the autistic community as a whole. ASAN’s comments on the current meeting are
below.
Directing Autism Research Towards the Priorities of Autistic People
ASAN supports research and workshops included in the IACC’s 2018-2019 Strategic Plan that address
important priorities of the autistic community. The Strategic Plan included a comprehensive September
2018 workshop on the co-occurring disabilities most common in autistic people (for example sleep,
epilepsy, and gastrointestinal and connective tissue disorders). It additionally included a 2019 workshop
1Interagency Autism Coordinating Committee Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum
Disorder (ASD): 2018-2019 Update at IV (Jul. 2020), available at: https://iacc.hhs.gov/publications/strategic-
plan/2019/strategic_plan_2019.pdf?version=3.
11on mental health in autistic people, a subject sorely in need of attention from the research community.
These workshops examined the trajectory and impact of these conditions across the lifespan - a
significant improvement upon prior work in this area - and included the perspectives of autistic people
ourselves. Several of the workshops, projects, and studies described in the Strategic Plan either
interviewed or worked directly with autistic adults. Our inclusion and investment in autism research is
critical for ensuring that future research aids autistic people. ASAN also appreciates that the IACC’s 2019
Summary of Advances includes research on important under-researched topics, such as the impact of
home and community-based services (HCBS) waivers on racial disparities in service needs and the lack of
adults with intellectual disabilities included in many ASD-related research studies.2
Nonetheless, there is a significant gap between the IACC’s publicly stated commitment to autism
research focusing on the real needs of autistic people and the funding actually directed towards this
work. According to the 2017-2018 IACC Portfolio Analysis Report,3 which summarizes federal and private
funding directed towards autism research, as of 2018 a mere 3% of total autism research funding went
to research on the quality of services and supports. Although the 2017-2018 report again states that 6%
of autism research funding went to services and reports (research which falls under the Strategic Plan’s
Question 5, “What Kinds of Services and Supports Are Needed to Maximize Quality of Life for people on
the autism spectrum?”), nearly half of that limited funding in 2018 -46% - went to the “practitioner
training” subcategory. Practitioner training is not research on which services and supports work best for
the diverse needs of autistic people - which is research our community urgently needs.
Research Question 6, the only question to focus specifically and exclusively on lifespan issues (“How Can
We Meet the Needs of People with ASD as They Progress into and Through Adulthood?”) is similarly
underfunded. Funding directed towards Research Question 6 accounted for only 3% of all funding for
autism research. Additionally, a full 39% of this funding went towards research into only one age group
and type of lifespan issue: effective transition services for young adults and adolescents with
disabilities.4 While ASAN agrees that the transition into adulthood is a critical period, funding imbalances
shortchange other critical lifespan research. Autistic people undergo the same range of life events as
non-autistic people and spend the majority of our lives as adults. Our needs in mid-life, our experiences
with marriage and parenthood, the ways our health and disability might change as we age, and our
experiences with aging itself deserve serious consideration, research, and support.
ASAN recommends that the IACC prioritize the use of longitudinal aging-related studies of autistic people
of a wide variety of backgrounds, socioeconomic statuses, genders, and ethnicities. In particular, ASAN
emphasizes the need to ensure racial, ethnic, and gender diversity in future autism research. As a study
in the IACC’s 2019 Summary of Advances notes, Black, Indigenous, People of Color (BIPOC) individuals are
2Interagency Autism Coordinating Committee, 2019 Summary of Advances in Autism Spectrum Disorder Research 28, 38 (May
2020), available at: https://iacc.hhs.gov/publications/summary-of-advances/2019/summary_of_advances_2019.pdf.
3Interagency Autism Coordinating Committee, 2017-2018 Autism Spectrum Disorder Research Portfolio Analysis Report (Apr.
2021), available at: https://iacc.hhs.gov/publications/portfolio-analysis/2018/portfolio_analysis_2018.pdf?ver=2.
4 Id.
12historically under-identified as autistic people, and there are often disparities in the services that they
receive. Any study which includes autistic adults but fails to include BIPOC people will dramatically reduce
its efficacy to the autistic community.
Critical research largely remains underfunded in large part due to an excessive and often ethically
questionable focus in the autism research community on the biology and causation of autism. The IACC
research questions which represent research on these two topics (IACC Question 2 and Question 3)
together accounted for more than half of all research funding in 2018 - 61%. While some issues
important to the wellbeing of autistic people, such as epilepsy and other co-occurring physical and
mental health conditions, require traditional biomedical research, the overwhelming majority of the
research represented by these two questions transparently aims to identify and modify the biological
mechanisms underlying autism in order to ultimately reduce the number of autistic people in the world.
ASAN, and the autistic community as a whole, strongly opposes such research. ASAN urges the IACC to
utilize its first committee meeting in more than a year to lead a change in focus for autism research;
from research that aims to eliminate us, to research that aims to help us live good lives.
Avoiding an ASD Diagnostic “Research Silo”
Autistic people have a great deal in common with other people with intellectual and developmental
disabilities (IDD). We tend to experience many of the many of the same academic and social differences,
many of the same executive functioning impairments, many of the same lifelong support needs, many of
the same issues finding and securing employment as adults, and a similar array of co-occurring
disabilities. While there are some research priorities and concerns that may be specific to autistic people
(ex. our high suicide risk), these are rarer than concerns that are common to all people with IDD.
Nonetheless, historically many of the researchers, agencies, and educational institutions which develop
effective services and supports for people with IDD have few connections with siloed autism-specific
research and do not receive autism research funding. The workshops and presentations listed in the
2018-2019 Strategic Plan indicate that this discrepancy still exists. For example, the September 2018 co-
occurring disabilities workshop and the May 2019 mental health workshop do not reference research in
these areas performed on people with other developmental disabilities, or generalist research on all
people with IDD in these areas, even though this research exists and should inform research on autistic
people. Similarly, the 2019 Housing Working Group largely ignored decades of research and practice
showing the efficacy of community living for all people with intellectual and developmental disabilities,
including those with the most significant support needs. ASAN recommends that the IACC discuss
situations in which autism research could be better informed and improved in quality by consulting with
the agencies, educational institutions, and researchers working on research on people with IDD
generally and other groups of individuals with IDD. Autistic people are not served by research that
reinvents the wheel or that views us as a separate category entirely, rather than a subset of a common
group of people with disabilities.
Inclusion of Autistic Adults in Autism Research
While some researchers have begun partnering directly with autistic people ourselves in the design,
production, and analysis of their research, most autism research is still “about us, without us.” ASAN
13recommends that the IACC use its unique role to promote the inclusion of autistic adults ourselves in all
forms of autism research. Autistic adults can provide input on not just our co-occurring disabilities and
lifespan issues, but on communication access, the design of studies on the neurology of autism, studies
on which services and supports work best for different groups, and indeed on any aspect of autism
research.
We particularly encourage the IACC to recommend the use of community-based participatory research
which works directly with autistic self-advocates ourselves (including non-speaking self-advocates and
self-advocates with intellectual disabilities), rather than acquiring study participants solely by contacting
parent representatives or our service providers. We possess firsthand knowledge and experience of our
own bodies and minds that other stakeholders lack. High-quality research done in partnership with autistic
adults ourselves is the only way to reduce gaps in the knowledge base.
Communication Access
Access to communication is a vital human right. Autistic people may use a wide variety of possible forms
of communication, including verbal communication, behavior as communication, and augmentative and
assistive communication (AAC) devices. At least one-third of autistic people are not able to rely on speech
to communicate. Nonetheless, much of the current research on communication and autism largely does
not reflect the diversity of communication styles in autistic people. Instead, it tries to determine how to
get us to communicate through speech.
ASAN is concerned about the excessive focus on only verbal speech reflected in the IACC’s Autism
Research Database entries for 2018, the latest year available. 5 While there were nearly 13 pages of
research which examined the impact of autism on verbal language and the best means of facilitating its
development in autistic people, there were only a few entries on the best ways of facilitating the
development of AAC use or other alternatives to verbal speech. ASAN therefore recommends that the
IACC prioritize significant additional research into how autistic people may best establish other forms of
effective communication. This research has immense potential to profoundly impact the quality of life of
autistic people who do not currently have access to a robust method of communication. More research is
urgently needed to establish which methods work best for which autistic people, and how to best support
every autistic person to access communication. Communication is a human right, and Nonspeaking
autistic people deserve research that prioritizes their needs and interests.
ASAN again thanks the IACC for the opportunity to comment. We hope that the IACC is able to put forth
new frontiers for autism research, rather than retreading upon the old. For more information on ASAN’s
positions with respect to autism research, please contact Julia Bascom, our Executive Director, at
jbascom@autisticadvocacy.org.
5
IACC Autism Research Database, Interagency Autism Coordinating Committee, https://iacc.hhs.gov/funding/data/ (last visited
Jul. 1, 2021).
14Noemi Spinazzi on behalf of M.D., Down syndrome-Autism workgroup of the Down Syndrome Medical
Interest Group
Autism occurs more frequently in individuals with some genetic disorders, including Down syndrome.
The prevalence of autism spectrum disorder in individuals with Down syndrome has been estimated to
be 16-18%, based on a recent meta-analysis, though estimates in the literature vary due to differences
in diagnostic approach and methodology. When autism co-occurs in a patient with Down syndrome, it
leads to a complex neurodevelopmental profile, in which characteristics of autism - communication
impairments, social impairments, restrictive patterns of behavior and interests - are superimposed on
common challenges in Down syndrome, such as intellectual disability, speech impairment, short
attention span and memory impairments. Due to diagnostic overshadowing and the lack of evidence-
based guidelines for assessment, the diagnosis of autism is often significantly delayed in persons with
Down syndrome, therefore delaying the start of targeted therapies that can improve the functioning and
quality of life of a child with a dual diagnosis. There is also inadequate research on which educational
and behavioral interventions are most successful in supporting children with a dual diagnosis. Given the
high prevalence of autism in Down syndrome, the significant impact that this additional diagnosis has on
the life of a child with Down syndrome, and the paucity of evidence on best practices for evaluation,
diagnosis, and intervention, more attention needs to be directed to this underserved patient population.
15Written Comments
16Oren Evans
Finally, after more than 70 years of worldwide research the two main pieces of the puzzle can be put
together and then all the other pieces fall into place. At first glance the answer seems improbable but
after 70 years of research it was obvious that the answer wouldn’t be obvious. There are several reasons
that the answer wasn’t found before, all mainstream researchers are medically trained and autism is not
a medical problem it’s more of a physics problem. These researchers are extremely fact resistant and
refuse to consider anything but a medical cause. Another reason is that one of the two main pieces was
unrelated to autism and had no connection to autism at the time and finally the data from the second
piece was considered a symptom of autism and not the genetic factor.
In 1998 a study using EEG technology was conducted to determine the impact of fluorescent flicker
(strobe) on humans. The flicker distorted every one’s brain waves but the most notable finding was that
the faster your visual response time (VRT) the GREATER your distortion became. This is the
environmental component of autism. It has the capability to distort brain waves enough to cause autism
in a fragile developing infant brain.
In 2013 the University of Rochester did a study on a group of autistic people and found that their VRT
averaged twice as fast as normal. The fast VRT allowed for large brain wave distortions and is the reason
they are autistic. This is the genetic component of autism that researchers have been looking for.
An infant that inherits a fast VRT is predisposed to becoming autistic. Their fragile still developing brain
is receiving very distorted information when exposed to fluorescent flicker causing improper neural
connections and pathways leading to autism.
Major studies around the world prove that vaccines do not cause autism yet parents continue to see
their children regress into autism after being vaccinated. This understandably drives the anti-vaxx
movement. What they have no way of knowing is that the exam room with the door closed is the most
concentrated flicker environment possible. This is what’s causing the regression, not the vaccine.
It’s well known that males (hunters) have a faster VRT than females (gatherers) which means that their
brain waves are distorted more than females. Bell curve calculations indicate that about 6% of males
and 1.5% of females are predisposed or 4/1. However the slower flicker in countries that use 50 HZ
electricity put more children at risk but the percentage gain for females is greater than males making
the ratio closer to 3/1in the UK, this has been confirmed by the University College of London.
There are 350,000 Amish, some vaccinated and others not, no electricity, no autism.
An increased exposure to fluorescent light, an increase in autism, NICUs and day cares or just the need
for more illumination, short winter days resulting in a seasonal variation or the abnormal amount of
overcast days of the Pacific NW causing an increase in autism.
I could go on and on but if you’re not convinced by now there’s no point.
17Ramey Chisum
Really need to focus on hyperthyroidism too. It caused my daughter's autism and it's nearly impossible
to research it when added to the fact that health sites can't tell the difference between the two. I of
course don't lump your site into that category, not at all.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4196309/
18Resa Warner
Please recommend to the Secretary of Health and Human Services independent replication of the
subject research as priority in autism research budgets. What issue could be more important than
identifying the biological cause of 80% of autism cases? I am not asking you to manage individual
projects or research portfolios. I am asking you to set a research agenda based on a biologically
plausible explanation. (increased uptake of lead) Autism cannot be prevented without knowing the
biological mechanism.
19Kevin Tallman
The International Brotherhood of Electrical Workers (IBEW) offers a self-funded health plan to its local
unions. The health plans offered are part of the Family Medical Care Plan (FMCP). Since the health
plans are self-funded, they are governed by the Employment Retirement Income Security Act (ERISA) or
in other words the US Department of Labor (DOL). Every plan offered by the FMCP has an exclusion
against developmental delays and does not cover speech, occupational, or physical therapy for those
who have a developmental delay. States mandate this coverage in private health plans but since the
health plans are self-funded, they are governed by the DOL. To this date the DOL has not mandated
self-funded plans to require speech, occupational, and physical therapies for those with developmental
delays. In the FMCP plans they specifically state one is entitled to speech/occupational/physical therapy
unless you have a developmental delay. What this means is children with autism are denied Applied
Behavior Analysis (ABA) therapy along with speech/occupational/physical therapies. We need help, this
discrimination can no longer be acceptable. Please reach out to your resources and advocate for the
DOL to mandate self-funded insurance plans to not allow developmental delay exclusions.
Link to the NECA/IBEW health plan.
https://www.nebf.com/fmcp/documents/plan_documents/
Page 12 of PDF is one of many pages that has the developmentally delayed exclusions
https://www.nebf.com/assets/1/7/Plan_16_SPD_May_2012_11.30.18.pdf
20Note: Personally Identifiable Information (PII) has been redacted in this document.
Blesse Fields
Blessings I will make this short and include my phone number [PII redacted] I live in TN and have
concerns after my son has been charged at school in Hawkins Co Juvenile Court for behaviors due to
autism. I will not go into more details here but wanted to voice that until the charges I was unaware that
the SRO in the schools have no access to Behavior support plan on Special needs children. Unless the
parents give consent which I plan to do tomorrow at our IEP meeting for [PII redacted]. I want to keep
this short but I was shocked to find this out. I also believe that law enforcement officers should have
some way (license ID) or something to inform them to protect adults with behaviors so they know how
to properly approach them. I have watched videos online and pray something can be done about both
the SRO in the schools mandatory training with NASRO would be amazing! Thanks for reading all this I
hope it was alright to send this by this route.
21Marc Lefebvre
As a parent of a teenage child with both development disabilities and mental health issues I appreciate
IACC's chairing committees to address housing/independent living because it is a goal, I think, for every
parent with a disabled child for that child to eventually live independently and hopefully have some level
of happiness in their life.
Housing issues is one of many concerns parents have but I think many would agree that the biggest
challenge is that therapies, treatments and medication are hit or miss and there is no coordinated effort
regionally or nationally to track persons and provide help to those who are treatment resistant and/or
whose presentations are very complicated making treatment difficult. It is a tragic missed opportunity
for information sharing and learning but most importantly help. This concern is compounded by the fact
that absent electronic medical files allowing care providers to access full medical histories easily that
care providers are missing possibly critical information, making therapies possibly less effective and this
is coupled with the fact that loved ones wonder if current privacy laws make it overly burdensome for
care providers to easily communicate with each other on histories and prior therapies. For many of us,
there is a view that science is just reaching the frontier of understanding the brain, resulting in hit or
miss drugs and therapies. Having said this, however, tracking and attempting to treat those who have
no true relief should be a national priority.
22Jobie Steppe
It appears that those diagnosed with ASD possess some characteristics such as seeking order similarly as
is required in the programming of computers, or who seek perfection. It also appears silicone valley and
other tech locals seek out and hire thousands of those diagnosed with ASD. This makes me conclude
those diagnosed with ASD should be utilized to seek out the root cause of demyelination classifying
them as researchers or should be hired as such. Is this being done?
23Rob Avina
Facts are important. There is an idea that they are becoming bifurcated and will soon be obsolete. I
think this is a false idea. A truth is only as true as the ideas surrounding it.
Following are 5 links. In order of creation and a short description of each. They are hosted on Google
servers, so they should be safe and work. Take the time and precautions you see fit. I have.
Disney Disabled Services Letter.pdf A letter to Disneyland's disabled services:
https://docs.google.com/document/d/1Qc2h_Z5ZYKefjRgJ_Ahfp0uU8r2O5-JV-
R_SvbDVf6A/edit?usp=sharing
1fTx0DDN.txt & dontdoanythingaboutthisplease.txt are the same document, a letter to CIA Director Haspel:
https://docs.google.com/document/d/1DlaL5oONIH0mB_vUamNbcMLrmwsPbhttfzTVILgiNXc/edit?usp
=sharing
jiminiproject.pdf
https://drive.google.com/file/d/15t_fHDgwa06bB4w0tWKoZZR8kjrJYxeB/view?usp=sharing
Business letter.pdf a letter to Chelsea Manning sent to her jail cell in Virginia by mail, with a copy sent to
her lawyer via twitter messenger:
https://docs.google.com/document/d/1CsvbTWchuMlaJLIb06iqKfRImG1tC3p6uZVZU0wil0Y/edit?usp=s
haring
A list of Fax numbers I have sent these documents to. Sorting by Date or phone will give you a good idea
of where I was trying to communicate to. The "Done - Good" tab at the bottom is only successful faxes
with page count confirmations as copied from my account:
https://docs.google.com/spreadsheets/d/1bexjO2Q_Zyd3Y15DpuC6xWuD6ViztzWWn0SwSaBtaM0/edit
?usp=sharing
There are other facts, but these are some of mine. Please look into this.
24Note: Attachments are available upon request.
Elissa Leonard
You have a duty to warn: this is the differential diagnosis for every single thing you label Autism
Spectrum Disorder. Pediatric B12 Deficiency misdiagnosis in the age of folic acid interventions that
mask B12 deficiencies in moms and babies.
Chaudhary H, Verma S, Bhatia P, Vaidya PC, Singhi P, Sankhyan N. Infantile Tremor Syndrome or a
Neurocutaneous Infantile B12 Deficiency (NIB) Syndrome? Indian J Pediatr. 2020 Mar;87(3):179-184.
doi: 10.1007/s12098-019-03117-w. Epub 2020 Jan 27. PMID: 31984470.
Malhotra S, Subodh BN, Parakh P, Lahariya S. Brief report: childhood disintegrative disorder as a likely
manifestation of vitamin B12 deficiency. J Autism Dev Disord. 2013 Sep;43(9):2207-10. doi:
10.1007/s10803-013-1762-6. PMID: 23334842.
25Note: Attachments are available upon request.
Elissa Leonard
Show me where there was an "autism epidemic" anywhere on earth, before we added high-dose folic
acid to the womb (80s) and instituted food guidelines disparaging meat (80s) and then added more
synthetic folic acid to all carbohydrates (90s) that mothers and growing children eat all day, every day.
Too many women have been convinced it is safe to be "plant-based" in the era of folic acid fortification
where their B12 deficiencies will go undiagnosed, and therefore acquired by their babies. Too many
women have the sense it is safe to begin pregnancy after decades of either a vegetarian diet or history
of taking any of the many medications that can cause B12 insufficiency: hormonal birth control,
metformin, antacids, statins, alcohol, antibiotics. Too many doctors still think B12 deficiency is ruled out
by lack of macrocytosis.
Not educating the public about this lockstep time line (excessive folic acid and concomitant low vitamin
B12) is akin to being part of a coverup.
Common gene variants like MTHFR have long existed. What hasn't existed is opposite extremes of B12
and folic acid deranging one carbon metabolism, as was forewarned to happen but went
unmonitored. Is it ethical to medicate everyone with a form of folate that is not well-metabolized by
everyone? Now we know it can change DNA methylation. Air pollution used to be worse, but as you
know nutrient status is crucial in dealing with pollutants and toxins. Blaming genes or toxins for what
the "B12 deficiency and excess folic acid" does (raise the metabolites homocysteine and methylmalonic
acid and also cause abnormal brain growth and/or cerebral atrophy) is pure obfuscation.
Check Homocysteine, Methylmalonic Acid and treat all patients with signs symptoms and risk factors of
insufficient B12 immediately or they will suffer serious permanent neurological harm including cerebral
atrophy. A multivitamin may raise the blood level, contributing to misdiagnosis. That does not mean it
reached the brain.
Guez S, Chiarelli G, Menni F, Salera S, Principi N, Esposito S. Severe vitamin B12 deficiency in an
exclusively breastfed 5-month-old Italian infant born to a mother receiving multivitamin
supplementation during pregnancy. BMC Pediatr. 2012 Jun 24;12:85. doi: 10.1186/1471-2431-12-85.
PMID: 22726312; PMCID: PMC3407531.
Kocaoglu C, Akin F, Caksen H, Böke SB, Arslan S, Aygün S. Cerebral atrophy in a vitamin B12-deficient
infant of a vegetarian mother. J Health Popul Nutr. 2014 Jun;32(2):367-71. PMID: 25076673; PMCID:
PMC4216972.
Richmond RC, Sharp GC, Herbert G, Atkinson C, Taylor C, Bhattacharya S, Campbell D, Hall M, Kazmi N,
Gaunt T, McArdle W, Ring S, Davey Smith G, Ness A, Relton CL. The long-term impact of folic acid in
pregnancy on offspring DNA methylation: follow-up of the Aberdeen Folic Acid Supplementation Trial
(AFAST). Int J Epidemiol. 2018 Jun 1;47(3):928-937. doi: 10.1093/ije/dyy032. PMID: 29546377; PMCID:
PMC6005053.
26Note: Attachments are available upon request.
Elissa Leonard
The Boston Birth Cohort study that came out last month shows high levels of Unmetabolized Folic Acid
(manmade synthetic form of folate, hidden by law in all flour products) in Black babies with autism.
This is an explosive healthcare story with roots in the well-meaning but unmonitored universal
intervention in the food supply to combat neural tube defects with synthetic folate. Sadly, adverse
effects were predicted by experts and their concerns were ignored.
The intervention is lockstep with exponential growth in the autism epidemic. The story is nuanced with
a number of variables, most notably vitamin B12 status. We cannot metabolize folic acid without
sufficient co-factor B12. Babies need B12 and folate working in synergy for normal brain growth and
development.
I have been studying the unintended consequences of excessive folic acid and concomitant B12
Deficiency for a decade. I attended a workshop at NIH last year on Folic Acid Excess and Vitamin B12
Deficiency. https://www.niddk.nih.gov/news/meetings-workshops/2019/metabolic-interaction-folates-
folic-acid-vitamin-b12-deficiency
Attached is my report with footnotes to current research. In 2018 autism researcher and pediatrician
Dr. Walter Zahorodny from Rutgers told me that the CDC was purposely obscuring the links to excessive
folic acid and autism epidemic.
Folic acid is not the same as folate from whole real food. News hook for this article is the Boston Birth
Cohort Study:
Raghavan R, Selhub J, Paul L, Ji Y, Wang G, Hong X, Zuckerman B, Fallin MD, Wang X. A prospective birth
cohort study on cord blood folate subtypes and risk of autism spectrum disorder. Am J Clin Nutr. 2020
Nov 11;112(5):1304-1317. doi: 10.1093/ajcn/nqaa208. PMID: 32844208; PMCID: PMC7657337.
If you want to watch real injured patients I interviewed as research for my feature film Sally Pacholok,
you can see them here: https://youtu.be/BvEizypoyO0
I am a philanthropist not selling anything. Just interested in public awareness of something that has
been causing serious permanent harm to all age groups.
27Note: Attachments are available upon request
Elissa Leonard
Children with Autism in this study have low vitamin B12 -- but unrelated to absorption (not autoimmune
pernicious anemia.)
They have acquired deficiency, presumably from undiagnosed moms and/or diet.
Why are moms undiagnosed? Because for 40+ years of folic acid, no one has been checking for B12
deficiency in absence of the anemia you were taught to look for. And a prenatal vitamin cannot reliably
replete B12... could be not enough, could be an analogue. Raising blood level to "normal" does not
necessarily address deficiency in growing brain.
Erden S, Akbaş İleri B, Sadıç Çelikkol Ç, Nalbant K, Kılınç İ, Yazar A. Serum B12, homocysteine, and anti-
parietal cell antibody levels in children with autism. Int J Psychiatry Clin Pract. 2021 Apr 6:1-6. doi:
10.1080/13651501.2021.1906906. Epub ahead of print. PMID: 33823740.
Additional Citations
Ozyurek H, Ceyhan M, Ince H, Aydin OF. Vitamin B12 deficiency as a treatable cause of severe brain
atrophy. Neuro Asia. 2021; 26(1): 187 – 191.
“Early diagnosis and treatment in infantile vitamin B12 deficiency are important to prevent the
irreversible neurological damage.”
Metyas MM, Abdelhakim AS, Ghandour HH. Screening of vitamin B12 in children diagnosed as Autism
Spectrum Disorder. QJM. 2020 May 5; 113(Supplement 1). https://doi.org/10.1093/qjmed/hcaa063.006
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